Saturday, July 25, 2009

We've had a pretty good day, although Matt and I have been very busy with chores. They never seem to end. I "relaxed" tonight cutting elastic out of diapers while Matt gave Jonah his last bottle of the night. He’s just now finally fallen asleep. It's almost midnight... again. Last night he didn't fall asleep until after midnight, but he did sleep until a little after seven, so I'm okay with it. We did have to get up three or four times and give him a little butt pattin', but he went right back to sleep with very little effort.His breathing has seemed more labored today, which always makes me nervous. We had him scoped when he was a month and a half old, but haven't since. I think I'm going to set up a time with the ENT to have it done again. As much as I hate it and worry about it causing blistering, it's just too big of a risk not to check in on things once in a while. I just don't understand what causes his stridor. Is it just a "floppy airway," and if so, what does that even mean? I mean stridor is the sound produced when pushing air through a narrowed space... right? That doesn't sound good.

I guess I just keep waiting for the bottom to drop out. I mean, he's doing so well - thriving, gaining weight - right now, it's just blisters. And I just feel like I'm living in a perpetual state of waiting for the worst. I don't know that I'm negative (although Matt would probably say that I am), I just think we've experienced too much hurt for it to remain so stable. I can't seem to get my hopes up... as much as I want to. I have told several people that with each new milestone, it's bittersweet. On the one hand I'm happy and excited and thankful for (fill in the blank), but on the other, I try to embed it in my head, you know, just in case. Am I making sense? Like, for Father's Day, when I was signing Matt's card from Jonah, I thought, "What if this is the only Father's Day card Jonah ever gives?" And when he reached up for the first time and touched my face when I was kissing on his belly (I told you I love me some nudey-nudey time), I started crying - partly out of happiness, partly out of sadness that maybe we don't get a lifetime of this. And I kept thinking at the beach, "What if he's not here with us next year?" Isn't that crazy? I wish I could just accept now for now and stop thinking about the what ifs. Because, truth be told, I'm not sure I would survive it. What if, what if, what if. I honestly can't bear the weight of that thought. And especially on a day like today, when his stridor is worse. It just scares me so much. It's not the dressing changes or blisters or draining or cutting elastic out of diapers or clothes modifying or constant bandaging that get to me. It's the fear of the unknown. It's the weight of the What If. Sometimes I feel like I can't stand up under it.

I get scared that my faith won't stand losing another child. And then I beat myself up because he's right here in front of me - smiling, laughing, playing - and although I don't take a moment of it for granted... my mind still goes there. To the unimaginable. "Remember what his voice sounds like, Patrice." "Remember the face he makes when you first walk in the room." "Remember how he laughs at Matt laughing." "Remember how he looks at you with those eyes." "Remember that smile." "Remember how it feels when he touches you." "Remember how he smells." "DON'T FORGET."

Is it intuition or paranoia? Is it substantiated fear or complete craziness? Could I survive if he doesn't? Would I want to?

Do you see how it goes? I hate it. I just want to be here, in this moment, today. Loving Jonah, living, trusting God. I get so scared that as many promises as He's made to me and as much hope as He's given me, He has not guaranteed me that Jonah will have a long, full life. He has promised me that He will be with me every step of the way, no matter what. And in my head, I know it's true. But if I were being completely honest, when I'm overcome by the What If, I wonder if that will be enough.

And I would pray that He would be enough, but it's not even a prayer I'm willing to utter. Because that would mean Jonah is gone. And that's just not an option.

79 comments:

I come to your blog many times a day to hear how Jonah is doing and how you are doing. You're amazing. For a couple as young as you and Matt are to have so much on your plate and handle it as well as you do, well, I just can't imagine ever being this strong. I wish I lived closer -- I would be right there with you and help as much as I could. Please take care and try not to worry so much. You and Matt are amazing and Jonah is absolutely darling. I love all of you!

Praying that you can live in the moment and enjoy every minute with sweet Jonah without being plagued by the "what ifs". The "what ifs" are terrible and they rob you of joy. I hate to see that happen to such a wonderful mama. Praying that peace will reign in your heart and replace the awful "what ifs"

I have to tell you, I had the same thoughts often when my son was a baby and still do! It's so easy to worry about them -- even when they are perfectly healthy! You just can't live in the "what ifs" -- you have to live in the real, current "now." And pray to God to watch over him, and keep enjoying and treasuring every moment like you are. I think that's so normal as a parent -- and it's OK! It means you are well aware of your blessings. That's a good thing. :)

Dearest Patrice, You are not the only one with the deep "What if" thoughts. I have ALWAYS had them with my girls, and have them now, and they are healthy and doing well at 25 and 23 years old. (You met my 25 yr old when we brought the popcorn cake). I have always blamed it on the fact that I was only 19 when I unexpectedly lost my mother, and I still feel that loss every day of my life. In addition to my personal loss, the news is full of people who get up in the morning expecting a 'normal' day and find it has all turned upside down by nightfall.

I don't remember the circumstances of Gabe's birth, but I believe you were anticipating Jonah to come out fine, and then had the unexpected land in your lap. This type of trauma lends itself particularly well to the "What ifs." It is normal and to be expected under the circumstances.

I KNOW in my head that God is in control and all will be well according to HIS will. But my feelings and emotions don't like to listen to my head. So when I get in one of those moods, I sing praises to God, I thank HIM for all the blessings HE has bestowed upon me, I ask HIM to forgive my sin of doubt and to put up a hedge of protection about me to keep satan away. Because I know that is who really whispers the "What if" thoughts to me.

Take the time you need to record the special moments, photos, journals, etc... Allow yourself to voice the "What ifs" back to God, and listen for HIM to remind you of HIS promises, HIS love, HIS presence with you always. Give all your worries to HIM and then go back to kissing the sweetest bare belly ever, to looking and laughing and loving. Then, just repeat as necessary.

Keeping you and your family in my prayers. BTW, received our magnet today and proudly drove around Topeka with it displayed for all to see!!!

Patrice,The What if Questions are normal.I have a son that just had a bone marrow transplant and we just adopted him..What if is a question I ask or think of 24/7 but I have trust that God knows what is best for our sweet baby boy.I will pray for peace for you and our sweet baby boy Jonah.God BlessRhonda

You dont know me, but Ive been reading your blog and praying for Jonah for months...

God, I ask that you bless this family. Give them your supernatural peace that passes all understanding. This situation is confusing, scary and frustrating for them, but we know and they know that you are in control and you have the perfect plan! We praise you that you know the end from the beginning and for the amazing way you have used Jonah to reveal yourself to us. Thankyou for Jonah's life and how he is developing; thankyou that you love him more than his parents even love him; thankyou that you know our hurts and our fears and you protect and comfort us when we come to you. Help the Williams to trust you in a way they have never experienced before, knowing that the God who created the Heavens and the Earth, brought down the walls around Jericho to fulfill his promise to His kids, and set His only Son to pay the ultimate price for our sins holds them in the palm of His hand and has promised to care for them and bless them regardless. Amen.

I am so sorry you are feeling this. I remember feeling these things when FigNewTon was at her sickest, when she would lay in my arms and tell me what songs she wanted people to sing at her funeral. And I know the faith that came out of it. I hope and pray the end of your fears is as happy as mine; FigNewTon is unexplainably healthy. God is not shaken by your cries. And only He knows the beginning from the end. Sometimes I thank God that I learned to live in the moment, even though I hate how I learned it. The "what if's" have a purpose, just make sure they lead you back to God and not away from Him. I will keep praying for you and your family. God bless.

Patrice, I think it is very normal considering everything you have been through for your mind to go to the 'what ifs'. My daughter is 3 (she doesn't have EB but has had some close calls of her own) and my mind still goes to the 'what ifs', but as things stay stable for longer periods of time, for me it has become easier to just enjoy her and not obsess about 'what if'. Don't get me wrong - I still obsess about 'what if', but I think it is slowly getting less and less. I will pray that Jonah stays stable and that you are able to enjoy him. I'm afraid I don't have many wise words as this is something I have really struggled with as well, but we know that God will be with us no matter what. I guess the hard thing is that we don't know what God has got in store for us next...and that is where the fear comes in. Sorry, I don't know if I've said anything useful, but please know that I am sending lots of prayers from Australia!

For what its worth, I don't even have children with health issues and I think those things all the time! Maybe I'm just morbid or worry too much, but after my brother (21 years old) died unexpectedly shortly before my son was born, I realized how quickly things can change, and I don't want to forget precious moments with my children.

I pray for your family daily that you will have the strength to care for Jonah, keep your marriage and faith strong, and for Jonah to be cured! I'll pray that you can enjoy Jonah without constant worries as well.

I understand the "What If" thought, as well, and I, too, find myself having trouble relaxing and enjoying the here & now without letting thoughts of "Don't forget this moment," stealing in because there is a very real chance my youngest child won't have a long life. I read your post and found myself nodding in understanding... yes, I know what that's like. Yes, I wish I could just trust God and not worry, but I, too, struggle.

((((( hugs )))))

I pray Jonah will live a long life and you will not lose him. I am so sorry that you even have to consider it a possibility. Sometimes things are so unfair and they really bite. This is definitely one of them.

Oh sweet Patrice, you are not alone! I think those "what ifs" get magnified after you have children anyway - I can't imagine how those what ifs explode after you've been through so much trial.

Caroline (my 9-yr old) has been asking a lot of questions about death lately. We've had several recent deaths of friends, and she's feeling afraid. She told me she was worried about dying because I would miss her. Needless to say, I was blown away. The only thing I could think to tell her was that every day God gives us is a gift, and that while I would miss her terribly whenever God chooses to take her home, I would treasure every day I had with her.

Pretty decent advice? I thought so, but then I went back and thought some more, and boy, was it hard to swallow! Those "what ifs" really started turning in my mind. But at the end of the day, I know that it's the truth. Like you, though, I just don't want to go there.

Sorry to ramble! I didn't want to turn this into something about me - just wanted to let you know I understand (on a minimal level anyway) how you feel, and I'll pray for God's peace in your heart.

Please kiss that sweet nudey nudey belly for me tomorrow! Continuing to pray for all three of you!

I worry about the What If's too--I think every mom does. I can only imagine how much worse it must be for you, with all you've been through. Having one of my girls get sick with just a regular cold freaks me out sometimes. The thought of something happening to one of them makes me want to puke. I've known people how have lost children and I wonder how they survive sometimes. All I know is this, God gives us the grace to deal with everything He throws our way. He NEVER gives us something we can't handle. That makes me want to pray that I'm never "ready" to handle something like that. =

The one verse that pops into my head right now is Philippians 4:8--Finally, brethren, whatever is TRUE, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.

Dwell on the TRUE that is in your life right now! And remember that you serve a good God. A faithful God!

I read your blog daily and pray for little Jonah. My daughter was born with stridor breathing. They said her floppy airway was something called laryngomalacia(i dont' think i spelled that right). Sounds like little man might have the same thing. My daughter had alot of trouble eating and breathing. When she was 5 weeks old and a little under 5 Lbs they did surgery to fix it. I know how scary it is. I am definately keeping Jonah in my prayers. I know the what ifs can really eat at you if you let them. With my youngest having health problems I always think about it. What if next time... you never know. I think thats a totally normal Mom thing to do!! Just know that you are not alone and the Roberts family in AL is praying hard for your family!!

Although I'm new here I love seeing Jonah and watching him grow! I pray for him every night along with a long list of other babies I met while my own son was in the NICU.

It hurts me to hear when things are going bad, it tears at my heart. I know if I was in any of you ladies positions I would not be able to handle it as well as you do. I hope that some time soon things will start looking up for you. I will continue to pray for you and Jonah.

Just remember that god has a plan for you and your family. Keep your head up! I'm here if you ever need to talk!

my husband sent this to me just yesterday as he is unable to sleep, fearing for losing our business and the 50 jobs we provide (thank you obama, the economy, taxes... but i digress). i hope this helps. i hear you. i really do. and i don't say this to minimize your plight. i really get it, so just read this as hopefully a help for your soul. love how very, very REAL you are with us, patrice."For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline" (2 Tim. 1:7). Fear is the enemy of faith. Fear is bondage. Satan wants us to live in bondage to the past and even the future, but God wants us to live in the freedom of His love and power in the present. As Paul wrote, "For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, 'Abba, Father'" (Rom. 8:15).

In order to be the leaders God calls us to be, we must conquer our fear and put it to death. This is a spiritual battle, and it can only be won with spiritual weapons. We must replace our fear with the peace that surpasses understanding. As Jesus told His followers, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world" (John 16:33).

As the apostle Paul told the persecuted Christians in Rome, "The God of peace will soon crush Satan under your feet" (Rom. 16:20). The God of peace is our conquering King; the peace of God is our weapon against fear and Satan. Before going to the cross, Jesus told His disciples, "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid" (John 14:27).

Fear is a natural response to obstacles, adversity and failure, but peace is the supernatural response that God gives us by His grace. Just as Jesus had authority over the wind and waves, He has authority over the storms in our lives. He has authority over our doubts, fears and shame.

Doubts, fear and shame are the weapons of Satan, but Jesus stands against Satan's fury and says with authority, "Peace, be still." The peace of God shatters the weapons of Satan and sends our enemy fleeing.

Hi Patrice, I have read your blog for ages now but never commented. I have 2 8/9 healthy kids and so have never gone to the depths to which you guys have been taken, btu I still stress way too much about the what ifs. My friends once reminded me that God will never give me more than I can bear and while I know this is true, I do sometimes get very sick of finding new limits at which I can supposedly cope - and that must be so much more true for you.

I reckon all Mums are like that - it goes with the job. And I too feel like I need to at least pretend I am in some sort of control even though I am very well aware that God is, and I am glad that is so.

On a lighter note, my friend told me this quote from Robin Williams - paraphrased here: Motherhood is like being a crack addict - you're paranoid as hell, can't sleep and you stink!! I love it :)

Patrice,There are tears in my eyes after reading this post, because I understand the thoughts of "what if..." - on a different level, and for different reasons, but still understand. I pray that God will ease your fears and give you peace in your heart as you navigate through these days.

You and Matt are such amazing parents. I wish you many, many more giggles, tummy kisses, snuggles and coos. Praying for all of you.

Praying that Gods love and comfort will surround during this time of need. May He carry this burden of "what ifs" so that you will not worry and be able to live in the moment. May his peace that surpasses all understanding comfort you. I pray for Jonahs complete healing!! You are such GREAT parent an I know that God blessed you with Jonah for a reason :)Mathew 6:34Revelations 21:42 Corinthians 12:9-10Praying and Believing!Kelly

Hi Patrice!I havent commented in a long while but still read your every update. Often times I have wondered if you feel the exact way that you expressed in this blog. As a mom, I find myself saying and doing alot of the same things. Life changes so quickly that it's hard not to want to remember every detail. Your situation is so unique that I truly believe it's only natural to feel the way you do...and its ok. Jonah is here and he is thriving! He is beautiful and healthy and in the name of Jesus, he is yours! I'm always praying peace over your hearts and I know that I cant fully understand the emotions that you face daily. But I do know that you are so incredibly strong and brave and I appreciate so much your ability to just be authentic. It's ok to be scared, but I pray that fear would leave your mind and heart and you woule experience great depths of peace...beyond measure. This boy is a blessing and he has touched hundreds of hundreds of lives for Jesus! What a great calling He has already fulfilled and will continue to do so! We hold you guys up in prayer and love you dearly...Ramee & Family from IL

You so far have had parenting experiences that the majority of us never have pr ever will. I think if I were in your place I would be going to those very same places. Wondering what if, when, how, how long....I can completely understand the need to go through those questions and I pray that Jonah will be living proof that all those questions were for not. Given your situation I think there is no right or wrong way to feel.....you just have to get through it. Keeping you in thought and prayer...hang in there Patrice!!!

This fear you have will settle down as he gets older(yes, he will get older :)). My daughter has some sort of undetermined genetic issue and is now 12. At first I was always afraid I would lose her. This went on for 5 or 6 years, and then I started to relax a bit. It will come it time. So don't worry about worrying. Take lots of pics and movies, that helps.The interesting thing for me was that I have 2 older 'healthy' boys and while I was obsessing over the continued presence of my darling daughter in my life, I almost lost my oldest son in a baseball head injury. That was a lesson for me. I was so worried about the 'sick' one and I almost lost the 'healthy' one. None of us are guaranteed a future. It's a hard reality to accept, for sure.So hang in there, you will do better as he grows(yes, he will row :)). Don't be so hard on yourself.

Patrice,Recently, I wrote a blog post about an experience I had in church and 3 songs that have carried me through a very difficult time in my life - while it's nothing, NOTHING, compared to what you and Matt are going through, maybe my experience and the music will help you. I hesitate to add this link because I do not want it to seem I'm trying to promote my blog - that couldn't be further from my goal, so please know that I add the link with pure intentions of reaching out and giving you maybe a moments peace. http://rebecca-feelmylove.blogspot.com/2009/06/voice-of-truth.html I know I would have the same What If moments that you are having and I pray that you never, ever have to see them realized!

Hi Patrice,I've just read this entry, and I get where you're coming from..... I think you have every right to think that way, but what a lot of people don't realize is - NONE of us is guaranteed another day, or hour or minute - we ALL need to live "in the moment" a little more. Not to the extent that we panic over every little thing (and I don't think you're doing that), but to celebrate what we have, and recognize that EVERY moment is a blessing that we won't get back. Celebrate the everyday things, commit the special ones to memory, and thank God for every minute, every day!

I am a 56 year old woman, with two wonderful children, age 19 and 14 - and was diagnosed with non hodgkins lymphoma at age 50- this is how i learned to survive the fear of what might be - at the beginning of the day i remind myself that i will never have this day again - and do i want to spend it bathed in fear - or bathed in happiness and love - it worked for me- good luck wendy

i am a 56 year old woman with two wonderful children - 19 and 14 - at age 50 i was diagnosed with non hodgkins lymphoma- here is how i survived the fear and uncertainty of the future - at the beginning of each day i remind myself that i will never have this day again - and i can spend it bathed in fear of the unknown or i can spend it bathed in happiness and love - it worked for me - remember- you will never have this particular day again - you have the power to choose how you spend it

I have been following your story from the beginning. You are so strong in your faith and love. This post left me in tears. I can't imagine what it is like to loose a child and the fear you have for Jonah. I pray for you nightly and keep your head up. You are amazing and strong!Brooke

After what you've been through, I think those are all perfectly normal feelings, depending on the intensity of them. It could also be postparutm depression or just a lack of sleep. I will pray for you, sweet Patrice, that these fears will not haunt you so much!

Sorry things are rough today. For the breathing worries, I would ask your pediatrician for a home oximeter. Its the monitor that shows O2 saturation and would give you more information about whether his stridor is becoming a serious problem no matter what's causing it. At least then if his numbers are good, it could put your mind at ease.

Patrice, I remember these feelings when our daughter (now 17!) was a perfectly healthy newborn. I could not imagine what I would do if I lost her. So I can only imagine that you feel them ten fold.

Like you, I am "worrier" --although I tell my husband, I don't worry, I "plan for the worst"! My glass is always 3/4 empty--I am a pessimist and I am always waiting for the "other shoe to drop"--and we have four healthy children.

I will pray for a special peace that only GOD can give and for a calm for your mommy heart. Don't let those "what ifs" steal your joy! They aren't worth it!

I understand the feeling of "what if"... I have a child with some special issues and the doctors had originally told us he would not survive after he was born. (he's 6 months now). What I've learned is that God only gives what we need for today. I could never have imagined the agony of what we went through while he was in the hospital and all the stuff that happened, but I DO KNOW that God gave us what we needed to endure it the moment we needed it. He didn't give it to us early, but He certainly did not give it to us late. His timing of giving us the strength to endure under that awful time was PERFECT. I KNOW that our great God WILL sustain you whatever life brings. But He won't give you what you don't need. Does that make sense? So IF you have to endure something tragic He WILL give you the strength to endure. But He won't give it to you until you NEED it. Our pastor also preached on John 6 a couple weeks ago. Jesus says (and I am paraphrasing b/c I don't have my bible in front of me) that NONE that the Father has given him will be lost. Our pastor pointed out that Jesus makes it a matter of HIS glory that HE sustains our faith until He calls us home. I found great comfort in that. Jesus WILL give you the faith to sustain you because of HIS holiness. Cling to the truth friend. Jesus WILL get you through whatever life brings. We all pray that Jonah has a long wonderful and full life! God Bless! dee

Dear Patrice,When I have those kind of thoughts that make me feel like I'm losing my mind, I repeat this verse over and over, "For God has not given me a spirit of fear, but of power, of love, and of a sound mind."

If I might summarzie Purejoy, sometimes the best way to keep our sanity is to focus on scripture. Those racing thoughts are not from our Father. Greater is He who is in you than he who is in the world.

I think every mother has the same fears, no matter what your situation. Your worries are valid coming from all the things you have been through. I pray that today, you would be encouraged, filled with renewed expectancy and hope.

Remember each moment simply because Jonah is growing and there will never be another moment exactly like it again.

As for the trusting God will be enough. I wish I knew what to say. I can/will pray for you. In my life, I am learning that I have to ask God to help give me the connection between His truth that I know in my head & letting my heart rest in that. Maybe that doesn't make sense, but I will pray that what you know about God will connect with your day to day emotions so that you can just enjoy your moments without the enemy creeping in with the "what ifs" ... rebuke fear from the enemy - you belong to God!

I don't profess that will make everything perfect; but I do know the more I say it, the more I believe it.

Go love on your guys and receive their love back. Enjoy this moment from the Lord & receive His love!

I just read your post and it echo's my heart as well. My 3yr old daughter is battling kidney cancer and we are living the same 'what if life'. I struggle daily with creating a normal life for her and my 5 yr old and getting my heart in the right place. I feel like God is teaching me to abide in Him daily. I am trying hard to find a way to live in this new place where the unexpected and the invisible enemy (cancer for us) also live with us. I too feel so overwhelmed somedays and then feel so guilty because my kids are right here with me. I just blogged about it this week, too.

Thank you for honestly sharing your journey. I began following your journey in March when a friend send me the link. She knew we had been at Brenners in the past. At the end of March they found my daughter's cancer and we were in the hospital for 10 days for her scans and surgery. We were praying for you guys a few floors away (as were my blog readers).

"The first rule is to keep an untroubled spirit. The second is to look things in the face and know them for what they are."-Marcus Aurelius

"Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you the unfailing strength to bear it. Be at peace, then, put aside all anxious thoughts and imaginations, and say continually: 'The Lord is my strength and my shield; my heart has trusted in Him and I am helped. He is not only with me, but in me...and I in Him.' "

Praying that you will be able to "live in the moment" and enjoy, to the fullest, each and every moment with the miracle you've been given. Have you spoken to your ob/gyn about how you feel? I really feel you would benefit from some anxiety medication. This would help to calm your anxiety and let you relax and enjoy your son to the fullest. I, myself, had to be put on some low dose medication after my son, to help calm my fears and it was a god-send. I hope you find this advice helpful. God is so good!!!

Patrice, I know well that paralyzing fear when my youngest was diagnosed with a blood disorder and tested for leukemia, when my grandson was diagnosed with a hole in his heart at 7 months with the potential risk of a stroke, and later when my middle child struggled with depression, drug and alcohol addiction. It is SO hard to trust God with our children and grandchildren even if we do in every other area of our lives. What you're feeling is normal. Keep giving it to Him, even if you have to do it 100 times a day. You are right--- He IS holding your hand. Keep taking it! Chant "Perfect love casteth out fear." =)

Dear Patrice,Your feelings are so normal as a mom. The worst part about EB is that not only are you Jonah's mommy, but his advocate and his watch dog. It has taken the ease and the spontaneity out of your role as a parent. All the things that happen, but moms don't talk about like skipping the bath for one night 'cause you're too tired or leaving them in their pajamas all day. You don't have that luxury with Jonah; you keep a regimented schedule to keep him healthy and growing.I had the same fears when my daughter was born. She was healthy, I on the other hand just about died giving birth to her. I felt the anxiety of never getting pregnant again because I didn't want to chance leaving her without a mommy. As Jonah grows you can take your cues from him. My daughter lives life to the fullest and always has. It came to the point where I had to decide if I was going to treat her like the child in the bubble or allow her to experience life even if I held my breath in fear.I started to have terrible panic attacks when she was about four. My wonderful doctor told me something I will never forget. You can control your world but what happens is that your world will get smaller and smaller so that you can control it.You are doing a wonderful job as Jonah's mother. I really believe you would benefit from talking to a doctor about your fears. They are all valid, but you don't want them to take over and destroy your happiness.You must take care of yourself so that you can continue to do such an amazing job with Jonah.

I wish I could hug you and take all your fears away.I will pray that you feel God's presence during those times.

Oh, my heart breaks for you. Yet, I have the same thoughts about N., without any of the worries for his health--simply because I have a hopeless case of nostalgia, and I always know nothing will ever be the same twice. Our prayers for you continue!

Thanks for being so real with us all. You are amazing!On a happy note, I know you must be super excited about Shana's baptism this week at camp...I was visiting my parents this weekend in Greensboro and they announced it at church! She is such an amazing young lady, I know you are a proud to be her big sister!

All you can do is just take one day at a time. Take a deep breath, savor each moment you have with darling blue eyes and if you do that, all of us in blogger land will continue to check in on you, think of you, and pray for your sweet boy. Only God knows what the future holds for him and He will certainly guide you towards that future...you two just get to hang on. Keep up the amazing work you are doing as his parents. He's truly a gift and he's incredibly blessed to have gotten two amazing parents such as yourselves. We are all pulling for you and I'll keep sending you love and hugs for support from Michigan!

I try not to comment too often. You've got lots of people who give you great advice. I'm not one of them.

I want to share this with you: you are not alone in worrying about the what-ifs. I KNOW the weight of worrying about what-if. We are trying desperately to have another baby. I never, ever in a million years thought I'd be "the one" who struggled with infertility; who can sometimes get pregnant by not keep the baby; who sometimes can not get pregnant at all. I thought I'd have a house FULL of children, laughing, playing and singing. I constantly find myself asking "what if we never have another child?" "What if M is the only one?" If I'd known at the time she was going to be my only full-term pregnancy, I would have enjoyed every single second of it. I can't begin to tell you how the "what-ifs" sometimes bury me under their weight. They are entirely too heavy for me to carry on my own.

I'm sorry you are carrying that burden. I'm going to pray for you that you CAN live in the moment, without the worry of tomorrow.

As you can read you are not alone in the What ifs! I know that reading that other mothers are thinking these very same what ifs has been good for my heart today. I know you dont know me but I check your blog everyday to see how sweet Jonah is doing. I personally deal with the what ifs as well. I have lost 4 children during pregnancy and at birth. I have my sweet son here with me and he has Cerebral Palsy. It can drown you if you arent careful, but I cling to my Savior and know that when I dont have the strength to get out of bed He does. I will be praying specifically for you and this struggle.

Patrice,I had to write. I've followed your story for a while and thought this would be a good time to let you know that there is yet another person out here praying for your family.I've been in the "What ifs" deep and just know you won't always be there. It's terrifying and awful and it's too bad anyone should ever have to go there, but it won't always be that way. It's wonderful that you don't take anything for granted, that is so important. I just pray that you find your way out soon and into the present.Our thoughts and prayers are being sent from MN.

I don't think I written before..My heart hurts for you.I am crying. What I thought of is how God says that He knows the plans He has for you, plans to give you hope and a future. There is no hope in worry and fear. He wants you to breathe in that baby, savoring every moment, looking with anticipation to the future. Whenever those thoughts enter your mind..rebuke Satan, if you have to do it a hundred times a day. Pick a favorite verse and cling to it with your very life. I went through a really bad time with healing from my past. Satan knew that he could bring back thoughts and the victory came when I rebuked him and quoted the scripture of Christ setting me free INDEED! It seems worse when you are tired or stressed. Give him the boot out of your house! I am praying for you. Kisses and snuggles to your little charmer!

Your blog was full of real& true feelings. It is hard for anyone to be able to put ourselves in the shoes of you and Matt.The comments are very good and filled with great advice, I don't feel worthy to say anything that would/could help anymore than what has already been said.On a side note, as I was reading the comments and tigers2 mentioned she had 2 8/9 children...I read it over and over trying what 8ninths of a child meant.....??? What???

Now I know why I am not worthy to make a sane statement...

Love and Prayers ALWAYS2shoes(without asking the specific prayers need to be directed for you)

I am in prayer for your sweet family that miracle baby of yours! I think as mothers we all struggle with the what if's. It's a terrible world we live in and when something horrible happens to us or someone close to us it just magnifies what could happen again. No one is immune to the bad things. And as mom's we know this. And part of being a mom is simply the part of being able to worry to much. Or having to worry too much. So I guess I'm saying your worries are legit. I too worry about my babies. Maybe it's because I was widowed at the age of 21 and know how harsh the world is, but to me it's a mom thing. I worry daily about if they're going to be around to do this & do that! So I guess I'm trying to tell you is that the owrry you feel is totally a mom thing! You are supposed to worry! But yes trying to live in the moment is a goal I think most moms should make, including me! Huge Hugs to you sister! Alexa (in alberta)

Please know that there is an element of what you're feeling in every mom. Not to take away at all from the intensity of your situation, from the extra stress, from the extra questions, from any of it.

but I do the same thing sometimes. I want to soak it all in cause "what if?" I tell myself to remember everything just in case. So part of being a mom is being terrified of losing our babies. Your fear is more real, something you've already walked through, and something that you have to wrestle through with Jesus. But He IS enough. Always has been, always will be. And this world, with all its brokenness and pain and sickness and everything is not our home. Praise God!!! And He is also not going to give us more than we can bear.

Hang in there, you're doing awesome. And Jesus wants our honesty. Take all this to Him. Tell you don't think you could make it if you lost Jonah. He wants to hear it all, I promise. :)

I have a 11 year old son with a fatal disease-only 50% reach age 20, etc etc etc.

I often tortured myself with the "what ifs" when he was a baby-and I still do at every birthday, wondering if we will get the next one.

As he's gotten older, it's not that I've gotten more complacent in accepting. It's more that I have a real, heartfelt knowledge that every day Dovi has, every year that we celebrate a birthday, is a gift from G-d. G-d is keeping him here.

Yes, the doctors help. So do we. But really, it's G-d who is letting him celebrate his next birthday. It's given me a great sense of peacefulness to take the burden off myself, and put it onto G-d.

There's a passage in Psalms "Put on G-d your burden and He will carry you" (or something like that-I'm Jewish and say it in Hebrew so I'm giving a loose translation!) I have put the burden of Dovi and his time here onto G-d. And I felt such a lifting of pressure when I was able to do so.

Hi Patrice. It is Monday morning about 2:30 AM. I have thought about you and Jonah all day today. I was just checking to see how your Saturday night went. I am praying that you can get an appt for Jonah soon so you check out that stridor. I am also praying it is nothing serious. I hope you are feeling a little more at peace today and in the coming days.

You're not being paranoid or lacking faith at all. It must be very hard to trust God when you've lost one son already, and losing Gabe doesn't grant you protection from losing Jonah. All you can do is like you said, enjoy each moment you do have with Jonah. If he lives to be 80 - then you haven't wasted a minute, like so many parents who didn't cherish their children and either lost them, or they grew up and the moments were still lost. If you do lose him early, which I pray you won't, then you will know you spend every moment you could loving on him and soaking up every moment.

Patrice,I have and do suffer the 'what if' syndrome! You all are in my thoughts and prayers. Try to enjoy the everyday things that you have! I am praying that the 'what if' syndrome gives you a break!Much love,Amy T.

Patrice:I wanted to tell you that I have been following your blog for some time now -- watching little Jonah grow into that adorable little man. As a mother of a 10 month old, I think some of the feelings you have are experienced by most new moms at some point. Granted, your little one has some special challenges, but I think most new moms (me included) worry to some degree that they won't see their precious children thrive and grow. Please know you aren't alone. I, as have others, are uttering prayers on your family's behalf. Jonah is here for a reason. Just keep moving. God is definitely with you.

Patrice, i think every parent goes through the what ifs. I only wish I took the time (or had a better memory) to be able to look back at all those precious first that our little ones do. My son, who is 13, always ask me mommy what was my first word? Sadly, I do not remember. You hold on to those memories Patrice because Jonah will live and will ask you one day, " mommy what was it like the first time I smiled?"

My daughter does not have EB so I don't know if there is something associated with that that could cause stridor. But stridor is not normal. My daughter is 7 months old and had stridor from birth. After going into respiratory distress several times it was finally discovered she had a narrow airway and had to have surgery to reconstruct her airway. She is just fine now, but without finding that out and having that surgery, I don't know what would have happened. Her airway was 80% restricted. I don't mean to make you worry but I have been there with the stridor thing and just wanted to tell you her reason for having it. Again, she doesn't have EB so I don't know anything about that. But I hope you find the reason for her stridor soon.

My daughter is perfectly fine and I will admit to you that I worried myself to death during my pregnancy to the point that I had to be put on medication to help try to alleviate some of that. It didn't really help and now that she is here, I worry every day and every night about the "what if's". I know you have way more on your plate than those of us have children without anything else going on. But I just wanted to tell you that I do think most of these other mom's are right in that we all worry like that.

I read your blog every day to check on baby Jonah :)He is so cute & you & your husband are wonderful parents, Just thought I should tell you that lol

I also wondered if you would please pass along some prayers for another lil boy. I read Mkmama's blog everyday as well I lil Stellan is not doing very well today. You may or may not know of her but her blog is mycharmingkids.net,thanks :)

Patrice,I have lost two pregnancies, but have three healthy children and I too have these fears from time to time. If they begin to consume me, I pray that God will take the fear from me. He does, and they will ease for a bit. The fight is long and wearisome though...The Evil One does not rest, does he? I always refer back to Ezekiel when the prophet is told to tell the bones to rise up and walk. I once heard a sermon on that passage and the prophet goes throughthe following process:

He learns what he is to do (Tell the bones to rise up)

He does it (and the bones rattle)

Then he takes it back to God (because it didn't work)

He hears what God wants him to do (again). He does it. It doesn't work. He takes it back to God. He hears what God wants him to do. He does it AGAIN. And then the bones rise up and walk.

I always remember this lesson and I continue to take it back to God. Eventually you will be able to move on...And so will I:-) You can also refer back to Samuel where Elisha wants it to rain (It might be Elijah--I get the two confused) and he prays for rain and then tells his servant to go look out the window to see if it is raining. He makes his servant go to the window SEVEN times before the servant sees a cloud. That's a lot of taking it back to God.

Hope these passages encourage you that you can overcome this with God's help.

Oh Patrice...you have every right to feel the way you do. I remember feeling exactly the same way. I miscarried my first baby after trying for 6 years to get pregnant and finally getting pregnant on our second attempt of IVF. When I got pregnant again 3 short months later I remember being in this state of constant worry. I literally would hold my breath every time the doctor would put that doppler thing on my stomach to listen to the heartbeat. I was waiting for the impending shoe to drop. When I got pregnant again even though I already had a healthy baby boy I still was anxious and worried, but it did subside a little. I miss my first baby so much and I can't wait to see him. I know he's in good hand. Who knows maybe Gabe is up there hanging out with him. Only God knows how many days Jonah has on this earth...he's so blessed that God gave him wonderful parents to love him while he's here.

I am blessed with a daughter whose only illness thus far has been a virus and a mild rash. And I think those thoughts. Those thoughts exactly. I tell myself to remember every moment. I wonder if my faith would survive losing her.

patrice, you and matt are the best parents. i couldn't imagine god blessing anyone else with jonah's care. every time i you post pictures of your day or describe changing him i am amazed at the amount of energy and determination you have. the love. it's in every thing you do and say. it's in every picture you post.

have you and matt ever talked about seeing a counselor? we began seeing one when phil was first sick, and then it's come in handy at several other times in our lives. it always helped me balance my feelings and i was able to learn to live in the "now'.

Patrice, I just found your blog tonight, and I am so touched by your beautiful family. Your honesty about your feelings and your incredible love for your precious Jonah are just astounding.I lost a little one, too, after I had carried him full-term. He was born alive, and he held on for about an hour before he passed. I think about him every day and miss him oh so much, but I praise God that we will all share a home in Heaven some day!I know that I have no idea what you're going through with Jonah, but just focus on that gift that God has given us--that you can be together with both your babies in Heaven for eternity--no matter what happens here. I will remember you all in prayers and be checking back here. Thank you for sharing your story.

I love your honesty. Sometimes those same feelings come to me & I've never lost a child but it's because I know of people like you who have. I'll pray that you can "live in the moments" with Jonah but w/out forgetting the yesterdays & without looking forward to the future ... praying for that perfect balance that you need!!

I completely understand this post. In my opinion you are not crazy for having these feelings. I am a lucky one with a healthy baby and I still have these feelings. I wonder the what if's. What if he gets cancer, what if he dies in a car crash, what if I die and he's all alone...It got to the point where I didn't want to leave the house because I was afraid of "living".